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Roll call for Endometrial Adenocarcinoma any stage

Cucu me
Posts: 214
Joined: Apr 2015

No many active posts now, so I said let start this topic just for information,

anyway the difference between Endometrial adenocarcinoma and UPSC is minimal.

Thanks

I'm Endometrial Adenocarcinoma Stage 4. Diagnosed in April 2015.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I am serous papillary endrometrial adenocarcinoma stage 4 high grade  diagnosed Oct. 2012'  Lou Ann

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

stage 3a, grade 3. I had UPSC diagnosed 10/14/13 and after surgery and 6 rounds of chemo, I am still NED. UPSC is ALWAYS adenocarcinoma.

EZLiving66's picture
EZLiving66
Posts: 1375
Joined: Oct 2015

I am Stage II, Grade 3 USPC diagnosed after my hysterectomy on September 30th, 2015.

Take care,

Eldri

pam0422's picture
pam0422
Posts: 25
Joined: Aug 2015

My mother was diagnosed with endometrial adenocarcinoma in March 2009, Stage 1b,Grade 1. Had a hysterectomy with no radiation or chemo recommended. She was in the "lucky" high percentile for low chance of recurrence. In Feb 2015 she was diagnosed with colon cancer that upon pathology turned out to be endometrial adenocarcinoma Grade 2. The oncologist said they can't stage it, too rare an occurence. It hasn't shown up anywhere else yet. One oncologist considers it a new primary and other oncologist a recurrence. One omentum node positive this time. She's on Megace and oral Cytoxan. We've had different opinions as to which treatment course to take. She's going to Cleveland Clinic as soon as she recovers from a hip injury to get a tie breaking opinion on treatment.

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

Or maybe it was Stage 1a.   I've been kicked to the curb by my gynecologic oncologist (over 5 years).  I believe I am absolutely fine.   So shocked and saddened to read of your mom's recurrence, Pam.  In my mind, if it was indeed endometriod adenocarcinoma found in the colon, well, it's gotta be a recurrence because it originated in her endometrium which she no longer has.  So how can it possibly be a new primary?  But then, what do I know?   I hope she does well (of course).

Was this  found on routine colonoscopy or did she have symptoms? (I'm having an overdue colonoscopy end of January). 

Suzanne

pam0422's picture
pam0422
Posts: 25
Joined: Aug 2015

Thank you Suzanne. Your thoughts on the recurrence versus primary is exactly the same as mine and her new oncologist. I'm a nurse and the new primary didn't make sense to me. The original oncologist was trying to say she must have had undiagnosed endometriosis. Took her for a second opinion and the oncologist said "No way is that a primary. Same cells, same type; so it travelled via the lymphovascular system." She had been having symptoms she thought were related to post gallbladder removal, but took it upon herself to have a colonoscopy before she was due for one based on a family history of colon cancer on her mother's side. Apparently this type of recurrence is so rare it is a 2% chance of it happening. I literally have found no info on treatment protocols, because there isn't one. That's also why they won't stage it. I'm so glad you are doing well and are going for your colonoscopy. - Pam

Ardnasnit's picture
Ardnasnit
Posts: 30
Joined: Jul 2014

I was diagnosed in May 2014 with grade 1 Endometrial Adenocarcinoma. After total hysterectomy was told I had Grade 2, Stage 1a Endometrial Adenocarcinoma. I had 6 rounds of Taxol/Carbo and 3 Brachytherapy. Just had a CT last week and report says NED!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2667
Joined: Mar 2013

Thanks, Cucu.  There is an older thread out there and when it gets too long I have a heck of a time finding new posts.

Diagnosed April 2012 with Uterine Papillary Serous Carcinoma (UPSC) Stage 1A Grade 3 (UPSC is always Grade 3).  6 chemo (taxol/carboplatin) radiation (25 external/3 internal).

God bless all the warriors with any cancer and I pray everyday that they find a cure for this evil disease.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1584
Joined: Jun 2015

I was diagnosed with UPSC May, 2015.  I had a radical hysterectomy July, 2015. I am stage 1a grade 3.

I am currently doing 6 rounds of chemo - Carbo / Taxil 3 weeks apart.  Brachytherapy has been recommended but I haven't decided if I will do it. I'm leaning towards not having the radiation.

No Time - It is interesting that you had the 25 external radiation treatments with your stage of UPSC when it wasn't even presented as an option for me. I wonder if they have changed the protocol since you had yours?  Or, if the doctors just have differing opinions on what the right thing is? hmmmm....  Makes it harder to make a decision on what to do.

I too pray daily for a cure for all cancers out there!

Love and Hugs,

Cindi

janh_in_ontario
Posts: 125
Joined: Sep 2010

I was diagnosed Sept 15, 2010. Hysti in October. Stage 2 grade 2. No chemo or radiation. Have had a couple of scares for recurrence but so far I am sleeping with NED.

I keep reading here, learning from you great ladies and some of your hubbies and children. God bless us all.

Happy Thanksgiving to my American friends!

 

Jan

 

 

 

 

Cucu me
Posts: 214
Joined: Apr 2015

all my sisters

wish the best of luck to us.

artist49
Posts: 87
Joined: Oct 2011

Disease  - UPSC  - discovered at routine exam August 2010.

Surgery in Sept. '10  revealed UPSC stage 4B grade 3   with  cancer

found everywhere in pelvic area and in all 40 lymph nodes tested -

horrible.    Chemo (no radiation) ended in Feb. 2011 and have been

NED since then. BRCA 2  positive. CA125 stands at one. Have been

eating a black raspberry smoothie every single day for four and

a half years -  berries preground 5 minutes in Vitamix so that the tiny

seeds are pulverized. Smoothie   also includes - half a lemon,

flaxseed,  kuzu root, avocado, cinammon, stevia, cranberries.

I don't know if this is helping but I'm afraid to stop as you can imagine.

Sometimes other berries.  I started adding a carrot last week.

The rest of my diet is only anticancer foods.  Good luck to all.

 

 

 

Cucu me
Posts: 214
Joined: Apr 2015

thanks for your inspiring posts. I follow pretty same diet.

I just ended chemo and already have a disturbing pain in the lung/liver central/right area.

I'm loosing my mind. What if it is recurrence.

wendybru's picture
wendybru
Posts: 11
Joined: Jul 2016

Congratulations!  How'd you do that?  Why do some recover fully, and others get plagued by recurrances?

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

After a routine hysterectomy in Seot 2005 I was found to hzvr cancer in my uterus, cervix and left ovary.   Unable to determine where it originated.  Thought MMT but went with endometrial and treated it as ovarian

Oct 2005 - staging surgery.  alsi removed appendix omentum and 25 lymph nodes.  Nothing else found.   Started taxol and carbo but allergic to taxol so used gemzar and carbo 

Aug 2006 - 3 treatments of HDR brachytherapy

Aug 2009 - after a CT scan my substitute doctor said I had a recurrence.  Wanted to start me on chemo and said I would probably end up with a colostomy 

Nov 2008 - went to another doctor who did a biopsy.  It came back positive but he sent me back to previous doctor

Feb 2010  - went to a completely different facility 3 hours from my home     The doctor said he believed I had clear margins   He did surgery    The tumor ended up negative    However did find one lymph node with microscopic cells   Went on a wait and see approach

2014 - had another soft tissue mass which was growing   Kept an eye on it   Developed many other symptoms which the OA said was not infinitive of recurrence    Found out I had hydroureternophrosis caused by the Brachytherapy     Ended up getting stent in August of 2014  stent replaced every 3-4 months

2015 - keeping eye on mass    Surgery to have my ureter re implanted to not have to go for stent replacement surgery for the rest of my life and to get a good biopsy of soft tissue mass scheduled for Dec 14th.

 

 

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Hey Y'all!  Diagnoised UPSC 1a/b, Grade 3, July 2009.  Complete radical hystorectomy, six rounds Taxol/Carboplatin, 

five rounds bracyotherapy.  NED ever since.  The doctors at M.D. Anderson in Houston gave me no leeway with treatment if I wanted to remain a patient there.  I had my five year check up in Oct. 2015 still NED, Thank God!  I didn't find CSN til I had been through with everything for a year.  I had an easy time compaired to a lot of you.  Would have been a lot easier had I had this group to guide me through.

 

P.S.  No where in my records nore any one has ever mentioned the word "adenocarcinoma" to me, but it was 2009

AWK
Posts: 364
Joined: Mar 2013

I was diagnosed Stage IIIC in April 2013  three other opinions have me as Stage IVB due to a difference in opinion about the furthest malignant met found at up my surgery.  Either way course of treatments would ve been the same.  Six rounds of carbo/taxol, 28 radiation and 3 brachytherapy.  New mets, all spread out and inoperable were found within 30 days of finishing treatment.  Then four Doxil, 12 Avastin (new growth was found after number 11) and I am now in a clinical trial for aldoxorubicin and gemzar  tested across a variety of cancers.  I just finished cycle six (each cycle has two treatments).  I had a biopsy on a new lesion last Friday and am so waiting for the results.  Hopefully it isn't malignant in which case I will not be removed from the study.  Here is hoping!

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

Hi Anne,

I seldom have too much that I can contribute to this site, but I think of you often. You are going through so much that I hope benefits you, but which we know ultimately benefits everyone diagnosed with the same cancer type in the future. You are giving your self to the knowledge bank and I admire you.  I am so impressed with your spunk and joy. Praying for you as you confront another possile battle along the way.

-jane

 

Cucu me
Posts: 214
Joined: Apr 2015

I just read this post of yours.

I reccured a month after end of chemo like you.

Are you Endometrioid endometrial adenocarcinoma?

Maybe not, cause you had radiation andI did not ....

I'm endometrioid stage 4, grade 2.

I'm starting I guess biological targeted therapy soon, don't know exactly what med....

Hope you are doing ok. Wish you luck!

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

I have endometrial MMMT that includes adenocarcinoma as an element in the mixture of cell types. Diagnosed as Stage 3B, Grade 3 in April, 2013. I had a high-penetration of my myometrium - they estimated more than 90% - and it was in my pelvic fluid. Not found in any of the vast number of lymph nodes removed. I had the customary 6 rounds of carbo/platin. I did not have radiation.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Hi, ladies,

I sometimes read threads that make me wonder if there is some confusion between endometrial adenocarcinoma and endometriod type of endometrial adenocarcinoma. As you know, not all endometrial cancers are identical, as there is more than one type. Endometriod adenocarcinoma is one type and is viewed as the "garden variety" type most likely to be a grade 1 or slow growing. Well, that perception is not always correct. Endometriod adenocarcinoma can be a grade 2 and even a more aggressive grade 3. Just wanted to share with all of you what I have learned in all the research I have done. Endometriod adenocarcinoma is only one type of endometrial adenocarcinoma.

 

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

Through a pap test.  Hysterectomy July, 2013 and found out it was UPSC.  I started Carboplatin/taxol in Aug. 2013.  Finished Jan. 2, 2014 and have been NED ever since.  No symptoms except bleeding or spotting from Feb. 2013 to May, 2013.   Two different types of abnormal cells were found on pap test and cancer was diagnosed as result of colposcopy.

Was told UPSC is a sub-type of Endometrial Cancer.  UPSC is rare.

 

Jeanette

 

molimoli
Posts: 514
Joined: Aug 2014

Moli  paging you, hugs

ncg007
Posts: 133
Joined: Nov 2015

 

Mixed Endometrioid and Serous Adenocarcinoma

Stage IIIC1, grade 3

Diagnosed July 2015

Total Hysterectomy August 2015

Chemo-Radiation with 2 rounds of Cisplatin and 28 radiation sessions completed October 2015

Chemo with 4 rounds of Carboplatin and Paclitaxel to begin December 7th

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2667
Joined: Mar 2013

Welcome ncg007

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

I was diagnosed through a D&C done by my gyn after several episodes of vaginal bleeding. The results came back with UPSC  in both my uterus and cervix. These finding were confirmed after my radical hysterectomy on Dec 5 2013. It's been 18 months since I completed treatment and I am still NED. Sandy

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Hysterectomy for atypical hyperplasia in 2001 - no cancer found!
"Recurrence" in 2008 - Grade 1, treated with pelvic radiotherapy
Second recurrence in 2010 - Grade 2 (it's getting more agressive!) major pelvic debulking surgery, colostomy, and 6 rounds carbo/taxol completed January 2011
Third recurrence in July 2012 - Letrozole (aromatase inhibitor) gave partial response for 18 months
Fourth recurrence in March 2014 - Provera (progesterone, which didn't work) swapped to tamoxifen and had Cyberknife radiotherapy in Oct 14. Currently responding.

I was supposed to be "cured" after the hysterectomy because the pathology didn't show any cancer.  I must be one of the very few women who find a recurrence 7 years later!

Do I get a prize for being the longest surviving member with recurrence (it's 14 years if you count from the hysterecomy!)

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1584
Joined: Jun 2015

How about 14 prizes?!!!! What a journey. And, I'm so glad you are still celebrating life. Here's to all of us continuing to celebrate together for many many many more years to come!

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

Snoopy party song playing in the background........

pinky104
Posts: 574
Joined: Feb 2013

I had endometrial adenocarcinoma which was UPSC, stage IVb, five and a half years ago.  I'm currently NED.

BC Brady's picture
BC Brady
Posts: 70
Joined: May 2015

Me too - still in active treatment since Jan 2015.  For you? Five and a half - wow - you give me hope. Thanks for chiming in!

Billie

Jacjac2's picture
Jacjac2
Posts: 44
Joined: Feb 2016

I'm Endometrial Adenocarcinoma Stage 4.  Possible diagnosis on  Dec. 2015, confirmed 1/25/16 when an entire tumor was taken out.  Will see doctor Thursday before my Chemo.

TartanToes's picture
TartanToes
Posts: 5
Joined: Feb 2016

As I posted earlier, I was diagnosed in November, 2013 after a total hysterectomy and lymph node removal on October 29, 2013. Early testing had my cancer at Stage I. The path report came back as Stage IIIc. My tumor while very widespread and even included the top of my cervix was thankfully a grade 1.

EZLiving66's picture
EZLiving66
Posts: 1375
Joined: Oct 2015

Hi Tartan Toes!  Welcome to the group nobody wants to belong to!!  But....if you have uterine cancer this is the place to be.  I'm Eldri, 63, in Green Bay, WI, married for almost 45 years with four kids.

Love,

Eldri

TartanToes's picture
TartanToes
Posts: 5
Joined: Feb 2016

I just wanted to share some good news. I saw my GYN oncologist yesterday for my 3-month check up. I happily have no evidence of disease. My next check up in May will mark the 2 year point in my remission. I got a tattoo to celebrate my first year and had it centered over one of my radiation targeting tattoos. What should I do to celebrate year 2??

Hugs!

EZLiving66's picture
EZLiving66
Posts: 1375
Joined: Oct 2015

First of all, congratulations!!!  After each three month extension of NED, a celebration is in order and after a two year mark, an even bigger celebration!  I'm not a tattoo person so I would get a piece of jewelry to commerate this milestone.

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1584
Joined: Jun 2015

Such great news Tartan Toes!

Not sure what to suggest for your celebration.... I'm not a tatoo or jewelry person. lol

For me, I would want to go to the park with my two little guys and my husband and enjoy the time away from phones, tv, computers, etc.

And then maybe plant something to represent the milestone and then I would get to see it every day!

Whatever you decide will be the right thing for you.

Stay Happy and Healthy!

Love and Hugs,

Cindi

Gardena
Posts: 102
Joined: Jan 2016

What a wonderful milestone to hit. Perhaps consider a trip to celebrate this most awesome milestone? Personally,  I like to travel,  so that is often my go to when wanting to commemorate a life event. Sometimes just a short road trip w my favorite music playing, heading for a bit of adventure is the best gift I can give myself.  I'm really happy for you and appreciate you posting your good news. It's uplifting and encouraging,  and however you choose to celebrate,  I hope it's joyous! 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I like Cindi's idea of planting something, something long-lived, of course!  Though a piece of jewelry would be nice, too.

Congratulations on reaching the milestone and being NED!

Chris

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

im stage 3C clear cell. 1 more internal radiation. I've had the surgery and chemo will be coming soon.

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

Since I am newer to this site, I don't know what all the abbreviations stand for. Can someone enlighten me ? Things like US... Etc. sorry I can't remember all of them

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

I've been here for quite a while and I still need to ask sometimes! UPSC is uterine papillary serous carcinoma, a particularly agressive form of uterine cancer. NED means No Evidence of Disease. Your doctor will probably be reluctant to use the word "cured" and instead says he sees no evidence of cancer( disease). CA125 is not an abreviation but rather the name of a blood test for a cancer indicator. It is not always a good indicator for uterine cancer, but generally 0-<35 is normal, anything higher would be an indication for the presence of cancer.

You will find answers to so many of your questions in threads on this board, but always ask about anything you are unsure of. We all enjoy sharing our knowledge.  In hope and caring, Sandy

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

Thanks so much for the info. I'm sure i will be asking many more questions.

cindy0519
Posts: 173
Joined: Nov 2015

I late as diagnosed with stage IIIC1, grade 3, USPC in early October after a radical hystercotomy.  I have compelted 4 of 6 chemo cycles (Carboplatin and Taxol) and will begin 5 weeks of external radiation sometime in mid April.

EZLiving66's picture
EZLiving66
Posts: 1375
Joined: Oct 2015

I had my hysterectomy on September 30th.  I also was diagnosed with UPSC, but Stage II, Grade 3. Did they use the DiVinci robot to do yours?

Good luck with your chemo and radiation.

Love,

Eldri

GoodLuck15's picture
GoodLuck15
Posts: 9
Joined: Mar 2015

Yesterday I had my 1st anniversary CTScan and am still NED!

 

I was diagnosed in January 2015 with Stage III Grade 3, mixed type with metastasis to the right ovary. After open-abdominal surgery the next month, nothing was found in 31 lymph notes or in the pelvic wash. Presurgery CA-125 was 33.

 

For a number of reasons I declined chemotherapy and started working with a holistic doctor in changing my diet/lifestyle, adding mistletoe and weekly IV vitamin C. My CA-125 has dropped to 5 (getting tested every 2-3 months) and my scans have been clean so far. Best of all, I feel terrific.I totally get that my choice is not for everyone and so I am in no way recommending that others do this. It is a deeply personal decision that has involved numerous factors.

 

I held all of you in mind and heart last night when I attended an event at the local Tibetan monastery. The program focused on, among other things, blessings to help all of us remove obstacles -- and extend our lives. It felt like such a fitting end to a joyful day. My best to you all this year! 

 

Sisters three
Posts: 165
Joined: Nov 2012

surgery 1-7-2013, no lymph node involment but had positive Washings. Was advised not to take chemo, so didn't . My CA-125 stays around 29 With slight movement up and down. Lung nodules, but they are stable. So they say NED, I love that!

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1584
Joined: Jun 2015

Congrats to both of you for milestone NED status!!!

So happy for you.

Love and Hugs,

Cindi

EZLiving66's picture
EZLiving66
Posts: 1375
Joined: Oct 2015

Welcome, GoodLuck15!!  Congratulations on having NED!!  That is wonderful!!!  I am very interested in what you did instead of chemo.  I made it through three chemos before it almost killed me.  I'm going in for tests in two weeks to see if my liver has recovered from that third chemo.  It's been almost ten weeks since that last chemo and I am still having some problems associated with it - neuropathy, hip and knee pain, fingernails falling off and persistent diarrhea.

I would love to hear more of your journey!

Love,

Eldri

GoodLuck15's picture
GoodLuck15
Posts: 9
Joined: Mar 2015

Eldri: I'm so sorry to hear about your experience with chemo!

My mom died from cancer 30 years ago (this upcoming May), so I am well aware of many of the issues many are facing. I think of Mom every single day. It is hard for our family to think how much of our lives she has missed. She left us five months after diagnosis.

When I was awaiting my biopsy results early last year, I had told my dad and brother (who totally understood) and my husband that, unless I could hear or read something to convince me, I was not likely to do chemotherapy. 

When I got my pathology results, I got a second opinion and it was confirmed I was a so-caled Type I -- primarily endometroid -- case. I was diagnosed with aggressive tumors in both endometrium and ovary, so that kicked me up to Stage 3, Grade 3. I also was told that, in my case, if I were to recur, it would be locally. There was no cancer found anywhere else, which included the 31 lymph nodes that were removed. A pathologist who read my reports told me this was "a miracle." If so, I'll take it. LOL!  My doctor confirmed that the recommended chemo was to be a mop-up of stray cells "just in case." I was dismayed by the treatment plan and said so. It didn't make sense for me to get treatment systematically for something that was expected to recur in the same area. Maybe I was naive to expect to be told I could "wait and see," but that is what I had felt. There are many other reasons why I balked, but this was a biggie.

I totally got that I was taking a risk on relying on the word of my gynecological oncological surgeon, but I decided that it sure looked and sounded as though he had indeed gotten it all. So, given that gut feeling with other factors, I decided I was going to move on with my life, assume I was NED whether anyone else would say it or not and try to find something to help me to recover and possibly heal. I have been told that if I don't recur in three years I am cured. 

I consulted with a holistic physician and radically changed my diet. I won't go into it here, but it is ketogenic. I've seen several postings on this and other websites, so I am adding nothing new here.  I take only a few supplements and inject myself with mistletoe and go for weekly IV-C infusions. 

I want to emphasize that both my gynecological oncologist and holistic physician did NOT agree with my decision. I went this way because I thought it made the most sense to me. I am blessed that my gynecological oncologist said he respected my decision and insisted on continuing to monitor me. He has been tickled with my progress, which means a lot to me as I did not "get with the program."

Best wishes for your recovery, Eldri. Please feel free to message me. 

 

 

 

 

 

 

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